This morning, Eleanor and I went for a walk in the cool spring air. I pushed her in the stroller while she sang her very own songs and brushed her hands across the leaves of the bushes I made sure she’d reach.
The rhythm of our movement made me recall my stagnation about a year ago, when I sat in our living room — staring at our brand new stroller with my hands across my brow to form an awning over my eyes — in absolute despair.
I couldn’t take her for a walk. I couldn’t do it. Just looking at that thing stirred up too much of my disappointment; taking her out in it would pull my fears, my unfulfilled expectations, my grief, my slowly dying dreams back to the surface from where I’d been hiding them.
She can’t see, so what’s the point?
I was angry. I was deeply saddened and hurt. I couldn’t move past this literal road block. After much hesitation, I eventually did move. It might have been days later, but I did finally take Eleanor for a walk in her stroller around our block.
And it became a very enjoyable part of our routine.
That summer we moved from one apartment to the next, the following winter I moved with Ellie across the floor when she began to crawl, and this spring I walk tiny steps with her as she holds my hands while learning to walk. But the most moving I’ve done this last year is through phases of emotion.
A question I am often asked when people learn that Eleanor is blind, is “how did you feel when you found out?” And I always tell them, I continued to love and care for her as her mom, and on the surface you might not have been able to tell because I did my best to stay positive, but deep inside I was suffering. In no linear fashion, I moved through the five stages of grief: denial, bargaining, anger, depression, and acceptance.
In that particular moment with the stroller, I was moving through depression’s thicket. A depression I didn’t realize I was plodding through at the time, as I pushed it away and tried to escape from it. I didn’t want to feel it. I wanted to be positive. I wanted to just love her; forget about it all; be happy. But it wasn’t that easy. And a handful of other times, like in that moment with the stroller, I could do nothing but let it come through, possess me, and leave me in a puddle of my own pity.
It would happen again and again. Mostly when I’d least expect it. Usually when times were supposed to be filled with happy (like her first birthday when she wouldn’t touch her cake because she was tactilely cautious about food at the time). Or when I was feeling particularly confident about my parenting, such as the time, around the beginning of this year, when I was feeling pretty great about finding time to read a guide for parents and teachers of children with visual impairments late into the night. But when I laid down to fall asleep, the hundreds of pages of challenges, obstacles, theories, therapies, solutions, and advocacies began swirling my mind and I could do nothing but just lie there and sob.
It’s all too much for me. I can’t do it. I’ll never be able to help her compensate for all that she’s missing visually.
My mind could not have been more full of worry. Not only was I overwhelmed with this new language of things to be concerned about — “compensatory skills“ “totality of action in context,” “categorization,” “object permanence,” “vestibular and proprioceptive,” “sensory integration” “social obstacles” “IEPs/IFSPs” and a newfound meaning of the word “independence” — but also all the obstacles that Eleanor would possibly encounter once she was old enough to realize her sight is not the same as most everyone else, and the overall challenge of living in a sighted world. To even further my momentary sadness, all this thinking about the practicalities of my worries, reminded me of all the dreams I knew I’d be missing out on that I couldn’t stop from running through my mind —
I wish I could open a book and show her and tell her about every single picture. Ask her to count the birds in each tree; tell me her favorite color. I wish I could watch a movie with her, color with her, watch her run across the yard catching bubbles. I wish I could point to the sky, the trees, the snow, the rain, the sun, a bird, a dog, a cat, an elephant, a flower, the ocean, the clouds, a mountain, the moon, the stars and could name to her what each was; show her how beautiful they all are — Turn her toward a mirror and show her how beautiful she is — I wish she could point and show me the things she loves — I wish she could see the faces of her grandparents light up with absolute delight when they see her. I wish I could say her name and she’d look at me. Stare me right in the eyes. That I could express to her in one glance all my love and affection and that she would instantly understand, and that I’d feel it right back from her.
I must admit — these are all thoughts I continue to struggle with every so often. Granted, these have been my dreams since childhood. I’ve always wanted to be a mother, and these were my expectations of how things would be. In the past year, I’ve had jealousy for other moms and babies. Oddly enough they weren’t of the “my kid is walking, talking, doing ___ first!” competitive type, but of much simpler things — all that looking they get to have with each other. Most likely as a defense against feeling too much pain, I’ve since grown to know a new kind of sympathy: sympathetic joy, which replaced my envy with celebration of the accomplishments of all children, not only my own. It’s refreshing and uplifting. It’s been hard to pull away from these mentalities, but I’ve learned so many invaluable things in doing so. And, I now know that I can no longer continue to stuff these old dreams away because they don‘t just go away. I must instead be willing to allow them to transform.
To let go of the old, and bring in the new.
Eleanor, and so many people I hold dearly, have helped me do just that. But, her living presence, is what has taken me to a new place of mind; something deeper, fuller, more real than my imagining.
That night was when it began for me; when I realized it. I crawled out of bed with a face wet with tears, moved into her room and watched her sleeping peacefully. I sat on the floor and reached in to feel the rising and falling of her chest. Moved my hands down to her arms and then to her perfectly folded hands. Saw her eyes closed in complete and perfect peace.
That’s my little girl. There she is, right there.
I’ve had it all so wrong. How can I be sad that she isn’t what I want her to be, when she is right there, breathing so slowly and tenderly; so perfect exactly as she is!
This was it: my epiphany. I knew right then and there that I could do nothing but love her exactly as she is and to be happy for what I was given. Acceptance.
- ac-cept-ance \ak-sep-tuh ns\ n.: the act of taking or receiving something that is given, as in a gift
I had finally opened my heart, in all its fullness, to Eleanor without the “what-ifs” or “should-bes.” I woke up to the present moment exactly as it is — a gift. And finally convinced myself in the midst of all my fret and pain, that what was right before me was better than anything I could have ever dreamed up. She is far more beautiful —
her straight-lipped grin, her made-up songs, the way her hands and feet twirl and her head turn to music, the way she asks “wha?” everything is with such pure curiosity, the absolute joy she feels when she holds her hands up to feel the wind flowing through her fingers, the way she turns each thing over and over again in her hands to experience it fully, her methodical cautiousness in her movement, her wild enthusiasm for the visceral tactile experience of moving paint across a page, how she pouts when you don’t do something quite like she wanted, the way she giggles when she hears herself laughing on video, and how she turns into a little squealing ball of silly every. single. night. at bath time when she splashes like crazy until me and the entire room are sprinkled with tiny drips of water
— far more wonderful than my expectations had given life credit for.
This lesson is not bound to just our relationship, but has embedded itself into my every day. If something doesn’t quite go the way I assume it would or should — such as flushing a toilet at 2:30 in the morning to discover it won’t stop running, or encountering a grumpy salesperson on an otherwise bright and beautiful day, or the weekly occurrence of a smoky-smelling apartment hallway due to a neighbor’s apparently unclean toaster-oven — it doesn’t ruffle my feathers. My nerves are calm because my heart is still.
Life is a gift. I realized that we each have the power to make the choice to see it that way even in the toughest of situations. This is what my daughter has taught me. No, life isn’t “perfect,” but if we cease to see it as a matter of perfect or imperfect, we no longer have to fight the battle of disappointment. We are internally okay with things as they are. This doesn’t mean we surrender to the injustices of the world, and discontinue the good fight for virtue or peace. It simply means, the fight no longer takes place within ourselves.
As time moves on, and those old dreams take on new, real forms, I’ve been able to focus on what is outside myself. I’ve been more open to the adversity others experience. I now think about how my brief suffering and feelings of isolation may be small compared to what Eleanor might encounter growing up in a society with its own unforgiving expectations: obsessions with appearances and bodily perfection, disillusioned perceptions of normalcy, and a resulting utter disregard, un-acceptance, ignorance, and isolation of anyone who doesn’t fit the part, particularly the blind or disabled.
I’m just starting my journey of recovery from my own naivety about disability (and will admit I am entirely confused about ableisms), but I will say, from the most recent things I’ve read lately, I’ve heard the same message: it’s not so much the actual bodily condition that creates the disability, because we are so adaptive, but rather the way the person is perceived, treated, and whether or not they are included and respected within their community that ultimately creates their “disabled” reality.
No one wants to feel different. Not because being different is “wrong,” but because the idea of “different” in the eyes of everyone else means you aren’t a part of what they’re a part of; that you aren’t accepted, respected, or loved. In the case of disability, it also means that you aren’t believed to be as “able” to do things as other people. So, the first response: pity. To make matters worse, people would rather turn away altogether and avoid the person than adapt their worldview to include all people, especially those that make them feel uncomfortable, vulnerable, or inadequate.
Much depends upon whether that person with the white cane, or speaking sign language, or in a wheel chair is seen past their adaptive tools — and to their core — as another human being; with potential for success in all facets of life, an ability to cultivate deep interpersonal relationships, and as a person capable of having overall satisfaction in life. In focusing on our external differences we neglect how we are ALL the same — alive, aware, and experiencing just like anyone else.
This is how I want people to know Eleanor. I want her to be seen as any other kid, because, well, that’s exactly what she is. She is just as in awe and is just as curious about this wonderful mystery we call life as any other toddler her age. And she is loving every minute of it. She has no idea that she’s missing out on anything, and when she does find that out, it may be hard on her in ways I don’t yet understand, but what do I know, maybe it won’t. My hope is that Brian and I can instill in her the belief in herself that she is capable of doing absolutely anything, the confidence to pursue whatever interests and dreams she’s passionate about, and the trust that she is valued, respected, and unconditionally loved by us exactly as she is. I hope the majority of people she encounters in her life will do this, too. So many of our friends and family already have. I know she will move through any doors she wants to. We just have to make sure we keep them open for her.
For now, we walk together on these breezy mornings. She may not notice the rabbit that just scurried away from us, the puppy in the yard ahead, or the flowers cascading the fence, but we walk. Together. We sing songs back and forth, she rhythmically kicks her feet, and I hand her sticks, rocks, moss, and flowers I find along our path. She knows I’m right there next to her, and always will be.
I love you, Eleanor,
“The only true disability is a crushed spirit. A spirit that’s been crushed, doesn’t have hope, see beauty, no longer has childlike curiosity, or an innate ability to imagine. If we can instead bolster the human spirit to have hope, see beauty in themselves and others, to be curious and imaginative, then we are truly using our power well.” — Aimee Mullins, an American athlete, model, actor, and lifelong double leg amputee